How Blind Is Blind?

A large opinion survey shows that a strong majority of people with macular degeneration do not think of themselves as blind, and they do not want the term to be used to describe their visual impairment.

GRANDVIEW, MO, Nov 9, 2006/WebWire -- The pronouncement is well known: “age-related macular degeneration (AMD) is the leading cause of blindness among senior citizens.” MD Support, one of the world’s leading nonprofit patient advocacy organizations, strongly emphasizes that people can see with AMD. They are not, therefore, going to go blind, and research has shown that such statements can be seriously hazardous to their psychological health, quality of life and motivation to seek treatment.

The recent survey shows that 93% of people with AMD are averse to the use of the word “blind” in connection with their condition. 91% of them do not consider themselves to be blind, 93% know they will not go blind from AMD and 93% think the word by itself should not be used in connection with AMD. MD Support’s position is that to dispense such false information is irresponsible, with potentially grave emotional consequences that can lead to serious depression and even thoughts of suicide.

Dan Roberts, founding director of MD Support and author of “The First Year: Age-Related Macular Degeneration,” stresses that these conclusions are not based upon any social stigma connected with blindness. “It is simply that ’blind’ means non-seeing,” said Roberts, who is affected by retinal degeneration. “People with macular degeneration are able to see using 65% of their remaining visual field, so--by definition--we are not blind. To define us in this way is incorrect.”

“Governments in most developed countries,” Roberts added, “make a distinction between those who are blind and those who are visually impaired. Eye care professionals in all fields also understand the difference. Patient should also be made aware of it so they are better prepared to tailor their lifestyles to their abilities. And, with partial sight, those abilities are quite different than they are for a blind person.”

A complete report on the survey is at www.mdsupport.org/library/notblind.html. An audio-visual presentation, “How Blind Is Blind?” by Dan Roberts and August Colenbrander, M.D. (Smith-Kettlewell Research Institute, San Francisco, CA) is also available at the above site.

Contact Information

Dan Roberts

Director

Macular Degeneration Support, Inc.

Contact via E-mail